Just Want To Something Positive

Prayers - and since your a nurse, you can help them in organizing the files they should keep.  for instance.

The first thing I did was contact every doctor he saw in the last five years for surgery and otherwise, I had all the records faxed to my attention. 

I also went to AC Moores and bought A large art folder that had a handle.  This way I not only has the reports, but the actual scans and films of every PetScan, CScan, Scope pictures that have been done to date.   

I created a three ring binderwith all his dr records, latest reports, blood tests, etc.

I keep the orignal and I make a copy for any new doctors we see. 

The fact you are a nurse, you can define some of the difficult terms and short hand.  Clarity is rare, and that could make a huge difference to someone looking for answers. 

 

 

 

I am a hospice nurse.  i recently found out that a very special friend of mine has esophageal cancer with mets to the liver.  He was told he has stage lV cancer.  He now has to decide whether of not he will have a stent put in his esophagus to allow him to eat.  He is only 39 years old and was diagnosed in Oct 07 with a prognosis of 6-9 months to live.  Ive seen this many times before,with 0 success stories.  What hope is out there?  What can I do to help him and his family?  I feel helpless!!!

I have recently said goodbye here, but, I saw this post and feel maybe this would be something someone would listen to.

My husband was dx in April 2005 with stage 3 EC. It was dx as being in his lynphnodes, and his larynx was somehow affected. There was no lung mets, and I did see any reports that said his liver was affected. The only real answers I got is if I got reports. He is still here.

He went through an attempted surgery. The, what I call, re-arranging his insides. I say attempted because after 2 or so hours, the docs came out and said the tumor (junction of the esophagus and stomach) was in a far too sensitive area. This was after cat scans, a pet scan, 2 ultra sounds and whatever else they did that should have told them it was unresectable.

So, after that it was radiation. Then chemo. For about a year. Around the end of January they wanted to do a pet scan. Said they couldn't it. Ins wouldn't pay.  Feb of 2006, they gave up. We went to Cancer Treatment Centers of America. Got the pet scan, bone scan, everything. They saved his life, up to this point. Summer of last year, mets to the brain. Took care of that. He was planting a garden while going thru whole brain radiation. This had to be done at home. But, they took care of it.

There was no stent put in until December of 2006. He had procedures done (PDT, the EGD's) - to help him swallow.

If your friend gets a stent - there is an excuse for no further options to get in there to help the dyplasia, and if it's a metal stent - no more MRI's.

Too early for a stent. He needs to be treated first.

My husband went through hell after the first PDT treatment. I think he jsut came home too early. But when he got through the intial after surgery mucous and stuff - I saw him swallow water for the first time in months without pain. Sounds to me like he needs another opinion before getting that stent. That stent being put in too early can cause problems. Bleeding. The tumor can grow into it - research it. I wouldn't do it. I am not a doctor, but a stent is part of the end stages. We are going on 2 years. He has hope. Don't let anyone take it away.

I would just like to add - LET NO ONE PUT AN EXPIRATION DATE ON SOMEONES LIFE. The docs don't know the person, just the disease. If a doctor puts a date on your end of life, then shame on him. We just had to deal with a major setback. His family kept asking me, "Did they say how much time he had left?" I finally got so mad - at his Mom and told her, NO ONE will tell him how much time he has to live. Even after I said that her to her, she insisted on asking the doctor. He told her, No one knows. There are so many different variables - the will to live, the treatments they tolerate, how long they can tolerate the treatment. No one NO ONE should have the right, or feel they have a responsibilty to a time limit on the life a person they know nothing about. If we don't stop letting doctors get away with putting a limit on lives, we shall never move forward to curative measures concerning this disease. They know little about it - so lets educate them by hanging in there and making them search for answers.

So sorry to hear about your friend. Have they been treating him over the last couple of months? Are they doing chemo and radiation to at least relieve symptoms?  I dont have any experience with a stent, so I dont have anything to share on that subject. 

Wishing him the best!

I completely agree with Lous38.  How can anyone tell you how long you have to live?  The will to live may take you another day or another decade, no one knows.  My husbands will right now is stronger than this disease and no one can take that away.  Continue to fight with your friend until he says he needs to slow down.  Stay positive and strong, (as much as you can at this point)

And Lous38 I hope you continue to write on this site.  I read it often, but don't always write.  Sometimes reading other stories helps while other times writing makes me feel better.  Either way you choose I wish you the best.  You sound like an incredibly strong person and your husband is lucky to have you there with him.

-Strong4Him